What do we do?

Residual epileptogenic tissue in the operated hemisphere is still causing seizures in Lewis. Should we ever consider after a Parietal Lobe Hemispherectomy 2006, further surgery intervention? Initially it was great. Then Puberty struck..Would their be a viable improvement in seizure frequency, after a reoperative Hemispherectomy or Brain Surgery.

I'm told the large grid doesn't need to go onto the Brain now. They use Probes. To localise where the Residual Tissue is on Frontal Lobe. It's still two operations though. The Skull would be opened to remove any tissue identified. 

I'm writing this and apologise to anyone whom is alarmed with this content. But, this is a worst case Epilepsy. You see its not just someone falling to the ground and thrashing about. It's not just taking a tablet and all is well. The medications carry all sorts of contraindications for the patient in so many ways. 

The decision to proceed with reoperative Brain Surgery will be made after proper discussion with the Neurological Team and us, if at all! I've already consented 10 years ago. Lewis would have a say this time. Things have progressed surgically in 10 years.

This is what is being proposed for Lewis. No 100% guarantee can be given that it will not cause anymore mobility issues on his left hemiplegic side.

The Specialists are looking at all the information & scans gathered over the past year. They will have a meeting and write to me/us. 

What #epilepsy does to the 30% like my Son surreal. 

The ambiguous attitudes are surreal. Most of all, the lack of knowledge that most people have is surreal.

Epilepsy can be controlled by medications for 70% of people. The drugs only suppress the seizures don't cure them.

What ever is decided here, after being told 10 years ago that further Brain Surgery could never ever be performed. Will be no mean decision for both of us. 

Presently we carry on as best we can, with the medications we have, hoping for the best.

#epilepsy #invisibleillness #seizures #sudep

Julie x